About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Saturday, February 23, 2013

Hi Family and Friends!

Celia and I recently got back from what may be my final embolization to treat this avm! What? That's what we said! Let me go back a little ways. I had been having a few bleeds here and there a few days before this trip to CO. So discouraging feeling like the bleeding will never end! Actually, I had a bleed as I brushed my teeth before leaving for the airport! The whole trip I would have a trickle of blood now and then, so I was always looking in the mirror and needing to have a tissue to dab my lip/mouth area! I kept worrying that I would have a big bleed while I was on the plane and would need to rush to the teeny, tiny bathroom and get blood all over eveything! Thankfully that did not happen!

Poor Celia had just gotten back from traveling for a dental conference and had a 2 day break before repacking and heading out with me! I am so grateful she makes time for me out of her busy life with her husband Greg and 2 kids Mark and Davis - not to mention all her wife, Mom duties, running a household, working with Greg @ the office covering for other dental hygenists and her hobbies (choir ministry) and pets! I was not looking forward to the cold weather in CO since it had been pretty nice and warm in South Texas! If the weather gets below 40 degrees, we don't like to leave the house! It wasn't too cold when we arrived, but by Thursday, I watched the big, fat snowflakes falling most of the day as I looked out the hospital window!

I had really tried keeping up with taking all the necessary meds to make sure my iron, potassium, calcium levels and electrolytes were @ a level where I would be able to have my procedure! It's kind of hard to do when I was having frequent bleeds and was more concerned with that and having to take meds to control the pain from the pseudomonas infection I had for a couple of months! I supplement my "diet" with Clear Ensure - I love the regular Ensure, but since it is a "milk product" that causes phlegm and I can't be hacking and causing possible bleed from the force of the hacking! I would drink Pedealite once in a while too - many times when I was having bleeds and my mouth was packed, I wasn't able to eat normally, so these supplements were necessary to maintain my health! Oh, and for any avm-ers out there - if you are taking strong antibiotics/steroids for a lengthly period of time, don't forget that may cause Thrush and that is extremely painful! I sure learned that the hard way! Now I make sure and take prescription Clortrimazol several times a day if I am on IV antibiotics or steroids! Having Thrush means its very painful to swallow - having to eat things like mashed potatos and oatmeal.

Back to the trip! I was happy to see Dr. Pinsinski (internal medicine) again - Celia had gone to the store to get me something and missed his visit. He's the one that said his first career choice had been to be an astronaut, so he's enjoyed talking to us about Mike Fossum being an astronaut! After running some lab work, Dr. Pinsinski said my levels were all good (yay!). Dr. Pinsinski ordered a CT Scan to check whether the infection I had been fighting had reached the jaw bone - negative. Had a visit from the infectious disease doctor (above) and we discussed being on an IV antibiotic for a couple weeks.

One of the first things I would end up having to wear while I was in the hospital, was these leg monitors! Support hose and then these massagers to make sure I was getting circulation! I don't like wearing them and have to be unplugged when I get up to go to the bathroom. Oh well.

The above photo is where I had applied a Fentynal pain patch on my inner calf and it burned my skin! My primary care physician Dr. Boynton had prescribed an inhaler spray (Dulera) to apply to the area before applying the patch - guess I missed entirely, huh? Oh well, it since has faded, but this is part of the fun I was having along the way! Speaking of fun, did I mention that I've lost hearing in my left ear due to avm? A couple weeks ago when I had an appt. w/the ENT here, while he was using the suction tool to clean out my ear drainage (ugh, I know) I remember thinking how loud it sounded! Then I realized I could hear! So, I'm hoping that once I get debulked, maybe I'll get my hearing back if something is just pushing against my eardrum or something.

Here I was getting my CT scan! The photo below is what I look like right out of having the embolization! I was not a happy camper when I woke up! Since Dr. Yakes does an angiogram, I have to lay flat for several hours before I'm allowed to get up and my back was killing me! I tried laying on my right side for a bit and that helped! Celia gave me some ice chips to help w/my thirst! After a bit I was allowed to @ least recline my upper body some, so that helped the back pain!

Here I am passing the time reading my Nook! I love having that and it's so convenient w/all the traveling I've done to CO! I had a small fleece blanket that has a photo of a puppy on it that Vicente gave me. I remember the first time I used it, Hanz pulled it off of me! Guess he thought it was his! Somewhere I have a cute photo of Hanz laying with this blanket and a cute yellow duck that Mom gave him his first Easter season with us!

Here is a photo of me with Victoria that is from Ethiopia I believe, and works in Housekeeping @ Swedish! She has always been so friendly and encouraging to us regarding my situation! Victoria has told Celia she has seen avm patients in worse condition than myself heal completely, so she would assure us I would be fine! When we gave her the good news that I was "done" w/my embolizations, she fell to her knees and started crying! She has always prayed for me and always asks for Mom, Celia or Mark (depending on whose with me)!

Lets change the subject for a little bit! My latest love is Bruno Mars! Mark got me his current cd for Valentines Day and I love it! I usually start my work day by popping that cd into the player on my desk as I enjoy my morning coffee and start my computer! I recently found out I'm driving the officer across the hall from my cubicle nuts by playing Taylor Swift all the time! Hey, I'm deaf in one ear and I thought I had the volume pretty low! I told him "we're never, ever getting back together, like ever"! Ha, ha!

Oh, thanks for asking about my kids! They are so precious! Such great therapy for me. I wish I could get a photo of them in action when Hanz gets Bella by her ear and they run side by side! So funny!

Here is my baby girl Bella Swan Cullen Schuman! My Hanzie loves to come over and sit on my lap! He seems to know that Mommy needs him for comfort and love!

We picked up the mail earlier today across town @ our P.O. Box and I got a nice surprise from Swedish! The nurses on the 7th floor sent me a thank you note! At first I thought it was a valentine because of all the pink sparkly hearts on it! Some of the people who took care of me @ Swedish signed it - including a fairly new Tech named Alex (aka Taylor Lautner from the Twilight movies)! He is such a cutie! He even put "Taylor" in parenthesis after his name! Everyone @ the hospital in CO is so awesome! I recently got an e-mail from Ashlely from W. Texas that has a venous malformation on her arm - don't know too many more details, but she just started seeing Dr. Yakes and agrees that his staff is incredible! She is just beginning her journey with Dr. Yakes, so let's keep her in our prayers!!

Oh! That reminds me, here is a photo of the lovely Mandi Shaw - one of Dr. Yakes P.A.'s, along with my sister Celia!

Mandi said she had to read my file several times when she saw that Dr. Yakes had written that I was "done"! Dr. Pinsinski said he read my chart 6 times to make sure he was reading what he saw! We had no idea we were this close. According to my chart, Dr. Yakes only used 4 cc's of alcohol! He always comes to see me right before I go under and all he said as he put his hands on his hips was, "well, I'm happy"! I figured he meant with my progress @ this point. He always gives me a hug and kiss - he is so incredible!

Our next step is this - I will return to Swedish in early April with Celia and have an MRI and Angiogram to see if there is any trace of avm. If there is (heaven forbid), then I'll have another embolization. Shalon had a couple of "hiccups" as she called them where she needed a little bit of embolization to knock off some left over avm! If there is no trace, then on that same trip, I have an appt. w/Dr. Robinson, the plastic surgeon that Dr. Yakes sends "his babies" to! That's how Mandi put it! Dr. Robinson will let me know when we can schedule him to "debulk" the left side of my face from scar tissue, fluids and old glue-like subtance other doctors have used in the past! Of course I can't help but be doubtful, because over ten years ago, Dr. Mawad in Houston told me he would be able to help me as well! Of course Dr. Yakes pioneered these procedures I've been having, and he has a fantastic track record! If Shalon hadn't gone through this first, I would have gone nuts already! If you check out her blog, she's got photos of her debulking process! Unfortunately, I still have a long road ahead, although we definitely have reached a milestone! I've already had a couple of minor bleeds - probably from the tissue breaking down where Dr. Yakes worked on it. I'm still wary of brushing my teeth or bending down to tie my shoes or something to that effect and not having a bleed! Until I get debulked and reconstructed (my lower lip needs to be fixed - yay, I'll be able to kiss my dogs! Never mind Mark right?) and I need a left earlobe) then I won't feel this is really over!

I do thank you for going with me on this journey and all your love, prayer and support! I will keep you posted!!!

Love,

Cyndi

P.S. Yes, Mark is very excited! Apparently when we called him from CO to give him the good news, he was @ our local grocery store (about 3 blocks from home) and he told everyone! We were in there the other day and I didn't know he had already told a lot of the clerks - and had asked Mark not to say too much yet, as I don't like to draw attention to myself. I may as well have told him to run and tell everyone because he did it again! I found him @ the pharmacy telling the employees because they filled my prescriptions for so long before the Fossums set up my account @ Walgreens!

Oh! I almost forgot - on our way home, while @ the Denver airport, we had asked for a wheelchair for me and met up with Adam from Ethiopia as he guided us to our departing gate! I remember him from one of my visits before and he asked how my treatments were going and gave Celia this beautiful prayer card he's been carrying around in his wallet - telling her to have me use holy water daily to bless myself with! He had remembered me from one of my prior trips and said he had been praying for me. Isn't that awesome?! We have met so many people along this journey that have given me so much support! Couldn't do this on my own, that's for sure!

I had to add this photo of me with P.A. Kelly and Dr. Yakes! All of them have been so patient, caring and helpful! In May it will be 10 years that I've been traveling to CO to have embolizations with Dr. Yakes every couple months! For the past year or so, we upped it to every 6 weeks! As always, I love hearing from you and can be reached @: dulce@grandecom.net or schumancynthia@gmail.com

Sunday, February 3, 2013

Hi again everyone! How are you? I'm actually doing ok. Saw my PCP - he said the staph infection is gone, and wonders whether I really have the pseudomonas one. I told him I had stopped taking the IV antibiotics, and he advised me to take 2 Zyrtec instead of my usual one, to see if that would help w/the itching discomfort symptoms I was thinking was an infection. Seems to be working ....
Meanwhile, I just have to tell you how much I really do love my life! Can't wait to get back to it full time! My husband Mark has been so nurturing, loving and supportive - I'm so blessed! My furry kids are the best - so funny, loving and great therapy for me in forgetting my worries for a while!
I wanted to share something with you that has been on my mind. Don't know how many of you are aware of some of our extended family - my brother-in-law Greg's younger brother Terry Fossum has written a book!

Gregs older brother Mike Fossum is an Astronaut!

My brother-in-law Greg Fossum, DDS - is saving a life - mine. Greg has always been the quiet one - doesn't say much, but you can see how he is taking in everything around him. I've known Greg since I was 13 years old! I just wanted to mention what a generous, fantastic person my brother-in-law Greg is! He has gone above and beyond to help me with my current condition! He and my sister Celia give me so much love, encouragement and make it possible for me to keep going to Swedish to get treatments for my avm from Dr. Yakes! The love they show for us is incredible and I can't ever thank them enough for letting me continue to "function" as normally as I can!

Marks brother Jim and his wife Shelley as I've mentioned, are so supportive in everything we do and are going through! Jim has outings with Mark and that @ least gets Mark away from always being my caretaker! Here's Jim with our furry kids! Hanz and Bella love climbing all over Uncle Jim when he comes over! I've always felt comfortable being able to talk to Shelley about anything - she is a great listener and has always offered her complete support! Shelley is very down to earth and easy to get along with!

I know it sounds repetative, but I just can't emphasize enough how grateful I am to everyone that helps me out! My mom went with me to my appt. with Dr. Boynton and paid for the visit too! I appreciate her taking time from her day to come be with me to offer emotional support!

My in-laws are extremely supportive too! They do so much for us, I'd be here all day listing all the things they've done to help! I miss them, since I've been having treatments, it's difficult to travel, so I haven't seen them since the last time they came to visit us in South Texas! Mark has since been to Ohio several times for different occasions, so he's been able to visit with Doris and George.

Unfortunately, I had a bleed yesterday and I was home alone. Thankfully it wasn't a bad one - I was sitting in the living room watching television and blood just started trickling down my chin. I have a mirror on the table near where I sit and happened to see what was going on. Rushed to the bathroom, rinsed my mouth and packed it with gauze. Mark was in Rockport with his brother Jim, but I didn't even call him when it happened. I figured I got it under control and it would be a matter of hours before Mark got home. Once Mark was home, I removed the packing successfully and just took it easy. I've been alternating between taking Lortab or Gabapentin for the pain I'm feeling on the left side of my jaw line. I don't think we'll get to the bottom of what is causing that until I see the infectious disease doctor @ Swedish in Colorado in a couple of weeks.

Since I've been taking the Gabapentin, that makes me so drowsy and I have fallen asleep @ work several times this past week! Yikes! I can't seem to get to bed until about 2:00 a.m., then I wake up @ 4:00 a.m. and I don't always go right back to sleep. I'll get up, go to the bathroom, sometimes get something to drink before going back to bed. Then before you know it, the alarm rings @ 6:30 a.m for me to get up and start getting ready for work! I just never seem to get enough rest!

Last night I had some applesauce and then some scrambled eggs for dinner - trying not to chew too much and cause any more bleeding. It seems to be coming from the left side (of course) between my cheek and gum area. I know this will all be over one day, so I just have to be patient. I look forward to being able to brush my teeth without worry, and being able to eat a thick piece of pizza with an ice cold beer! Some nachos with guacamole and a Mark-a-rita! Yay! I'll celebrate my recovery one day!

Thank you all for listening, being supportive and all your prayer! I do have good moments in between the bad ones - I love my life and treasure my family! I'll keep you posted!!